Kamlesh

Systemic sclerosis (SSc) and Neuropathy Pain

5 posts in this topic

Hello All,

 

Any one with Systemic sclerosis (SSc) having Neuropathy Pain? Can you please share your experience?

 

I have severe Neuropathy pain in muscles of both legs. After trying so many medications including several control substances, my pain management doctor has found no viable solution. The best medications he found Gabapentin (up to 4800mg) along with Lamictal (Lamotrigine) up to 500mg which are very high dosage and cause severe drowsiness and dizziness.

 

Appreciate any input.

 


Kind regards,

 

Kamlesh

 

 

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Hi Kamlesh,

I'm sorry to hear that you are still having severe neuropathy pain and that your pain management doctor has not really been able to sort out the problem for you.

Thankfully, I don't suffer with peripheral neuropathy, so can't advise you from my own experience. I have taken gabapentin for a short time, when my first hip was replaced, but was only on the medication for a short while, so didn't suffer any particular side effects from it.

I've found another thread on Peripheral Neuropathy which I'm hoping you'll find interesting and helpful and some of our other members may be along with more first hand advice.

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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I take pregabalin and it is very effective.

 

Isn't Gabapentin a generic of Pregabalin?   I have read that the generic is not so good, but I may be wrong, just saying what I understand.

If I am correct then Pregabalin may be worth a try.

 

FYI I take 150 mg 3 times per day and I think the max dose is something like 600 mg per day.

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Hi Kamlesh,

 

I used a TENS unit for neuropathy for a few years. It was very helpful, more helpful than the medications I tried. Luckily for me, that particular batch of pain went away when the area (my whole thigh) became completely numb. 

 

So for some of us neuropathy sufferers, there is light at the end of the tunnel...the complete bliss of numbness!

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I've not heard of TENS, Shelley. Would you mind posting some detail? Thanks.

I have a friend who uses carbamazepine for peripheral pain and has so successfully for many years. If my Pregabalin stops working, I shall ask for this next.

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